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Family Caregivers in Cancer: Roles and Challenges (PDQ®)

Factors to Consider in Caregiver Assessment

To be effective, caregiver assessment should take into account what the caregiver is able and willing to provide. Gender stereotyping may lead the oncology team to assume that women are more able to perform tasks such as wound dressing, feeding, bathing, and wheelchair manipulation, but this is not always the case.[1] Caregiving may be influenced by gender and by the expected caregiver roles within a family unit. A meta-analysis of 84 studies of caregiver burden found that spousal caregivers were more distressed than other caregivers and that women were more distressed than men.[2] The reasons for gender differences may include the following:[3]

Women tend to perform more personal care tasks.

Women are more likely to assume the primary caregiver role.

Women are less likely to obtain formal help.

Women are more likely to experience cultural and social pressure to become caregivers.

Ideally, caregiver burden should be measured in the clinical and research arenas with a multidimensional, valid, reliable, and clinically relevant tool (see table below). However, most tools measure objective or subjective burden rather than both types simultaneously. Objective measures of caregiver burden comprise variables such as the number of hours spent providing care or the actual count of tasks the caregiver performs.[4][Level of evidence: II][5] Objective measures are usually short and easy to answer, often pointing to a clear direction for problem solving and direct intervention.[6]

28-item rating scale measuring caregiving tasks for a child completed by family members

Caregiver strain, an evolving term, occurs when caregivers perceive difficulty in performing their roles or feel overwhelmed by their tasks.[15] Also known as subjective burden, this term is used to describe the emotional reactions that may accompany caregiving. Anxiety, worry, frustration, and fatigue may contribute to caregiver burden and strain and may not be visible to members of the treatment team.[2]

Demographic and psychosocial characteristics associated with caregiver distress (e.g., depression, general psychological distress, and cancer-specific distress) include the following:[16]

Being a woman.

Being younger.

Being the patient's spouse.

Having lower socioeconomic status.

Being employed.

Lacking personal and social support.

Factors specific to the caregiving situation that also are related to caregiver distress include caregiving burden, self-efficacy for caregiving, types of care provided, and the survivor’s functional status.[16]

Family caregivers report various problems with their caregiving experiences, including conflict among their social roles, restrictions on activities, strain in marital and family relationships, psychological distress, and diminished physical health.[17]

Timing of the Assessment

Caregiver assessment can be performed at any point of contact within the health care system. Ideally, a comprehensive caregiver assessment should be performed when the patient is first diagnosed with cancer, when the patient presents in the emergency department, and when a major transition is planned. In systems where caregivers are assessed, caregivers can be acknowledged by practitioners as valued members of the health care team. Caregiver assessment can identify family members most at risk for health and mental health difficulties so that additional services can be planned accordingly.[18]

Culture

Caregiver assessment needs to be multidimensional and reflect culturally competent practice.[19] Studies have shown that cultural beliefs play a part in influencing family emotions and concerns in the cancer experience.

In a meta-analysis of 116 empirical studies, Asian American caregivers were found to provide more caregiving hours than white, African American, and Hispanic caregivers; to use lower levels of formal support services; and to have fewer financial resources, lower levels of education, and higher levels of depression than the other subgroups.[19] These findings are important for the oncology team because caregivers with no outside help are more depressed than those who receive help. A study involving unmet needs and service barriers among Asian American caregivers found that caregivers refused outside help because they “felt too proud to accept it” or “didn’t want outsiders coming in”; other reported barriers included “bureaucracy too complex” or “can’t find qualified providers.”[20]

Access to care may be compromised by the family's reluctance to discuss the disease among themselves. Some Asian Americans believe that talking about death or dying is bad luck, which greatly complicates discussions about prognosis and informed consent.[21] Keeping a cancer diagnosis secret from a patient and avoiding discussions of disease progression can add to a caregiver’s sense of burden and responsibility. Early in the initial assessment, cultural beliefs about illness and caregiver roles should be identified and discussed.

Studies show that Hispanic and African American patients and caregivers underutilize community health resources, including counseling and support groups, home care, residential care, and hospice services. There are many reasons for this underutilization. One important reason is that strong family ties may prevent minority caregivers from seeking help outside of the family unit.[22] A study that compared African American, white, and Hispanic caregivers found that 75% of Hispanic patients and 60% of African American patients lived with the family of the primary caregiver. The minority families relied more on informal caregiving from friends and relatives and had larger social support networks than the white families. However, this increased sense of obligation to provide care for older family members was associated with more caregiving hours, greater resignation about caregiving, higher levels of caregiver strain, and a larger reduction in household income than that reported by white caregivers.[22,23]

Another study analyzed reports of employment loss due to caregiving. Results showed that African American and Hispanic caregivers were more likely than white caregivers to reduce their work hours to care for patients. In addition, minority caregivers were reluctant to use formal nursing home services for their loved ones. The decision to reduce work hours rather than place a relative in a nursing home was associated with increased psychological, social, and financial burden.[24]

Accepting the burden of caregiving may lead to depression in caregivers. Caregivers who have no outside help are more depressed than those who receive help from secondary informal caregivers or from formal resources. Despite reporting stress, many Hispanic and African American caregivers do not seek outside help, even when they are aware of support groups and other resources. This barrier to care may be a reluctance to share familial problems with outsiders. Other barriers include the following:[25]

Lack of availability of outside help.

Lack of community awareness.

Lack of trust in social service providers.

Misperceptions of the role of hospice services.

Because African Americans rely heavily on closely knit groups of friends and family, they are less inclined to welcome strangers such as home care workers into their networks.[25]

In addition, a prerequisite for obtaining hospice care is the presence of a primary caregiver in the home. Because African American family members often must work outside the home, no one is available to care for the patient, and the patient may thus be barred from hospice care. Members of the African American community may also be uncomfortable with the concept of palliative care, which seems to encourage the patient to give up and stop fighting.[25] These cross-cultural issues are important in assessing caregiver needs and in designing clinical and educational programs to meet those needs.[26]

Caregiver Age and Health Status

Family caregivers often feel unprepared, have inadequate knowledge, and receive little guidance from the oncology team for providing care to the cancer patient.[27] Older caregivers are especially vulnerable because they may present with comorbidities, they may be living on fixed incomes, and their available social support networks may have shrunk. In addition, older caregivers of cancer patients may neglect their own health needs, have less time to exercise, forget to take their own prescription medications, and become fatigued from interrupted sleep. It is therefore common for caregiving by older people to lead to poor physical health, depression, and even increased mortality.[28,29]

Younger caregivers must generally juggle work, their own family responsibilities, and sacrifices involving their social lives. Middle-aged caregivers typically worry about missed workdays, interruptions at work, taking leaves of absence, and reduced productivity.[30,31]

Socioeconomic Background

Substantial out-of-pocket costs involved in caregiving can create financial strain for the families of patients with cancer. Higher income can mitigate some of these effects because wealthier families are better able to purchase care and external support services, which can lower feelings of distress. On the other hand, low personal and household incomes and limited financial resources may also place families at risk for treatment compliance or treatment-related decisions that are made on the basis of income.[32]

The Family and Medical Leave Act

The Family and Medical Leave Act of 1993 (FMLA) was designed to give employees the option of taking time off from work for their own serious medical condition or that of a relative without losing their benefits or their jobs. Family members are entitled to a maximum of 12 weeks’ leave under the law; however, since its implementation, FMLA has been met with resistance from employers and underutilization by employees. In an exploratory study involving 45 caregivers of children with chronic illnesses, FMLA was least used by unmarried women with annual incomes lower than $35,000.[33]

Norms, Roles, and Expectations

The original theoretical models for understanding caregiver burden highlighted caregiver appraisal and role strain.[34,35] Multiple roles performed by caregivers of cancer patients can compete with each other in relation to caregivers’ physical and emotional resources.

Role strain theory has been used to explain caregiver burden in numerous studies. Results of a study of 457 middle-aged caregivers showed that the more social roles a caregiver performed, the more likely the caregiver was to experience stress and negative affect.[36] Employed caregivers who were also caring for children reported higher levels of stress; however, employed caregivers beneﬁted from the respite provided by work and from the support of employers and co-workers, which enabled them to replenish their psychological resources. Encouraging caregivers to maintain their roles as employees might therefore be helpful.

Focus has shifted to the treatment of caregiving as a dyadic phenomenon, based on the recognition that family caregiver roles are complex and overlapping. By its nature, caregiving is fundamentally relational [37] and often reciprocal.[38,39] To be effective, any assessment should take into account not only what the care recipient requires but also what the caregiver is able and willing to provide.

Weitzner MA, Jacobsen PB, Wagner H Jr, et al.: The Caregiver Quality of Life Index-Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res 8 (1-2): 55-63, 1999. [PUBMED Abstract]

Minaya P, Baumstarck K, Berbis J, et al.: The CareGiver Oncology Quality of Life questionnaire (CarGOQoL): development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer. Eur J Cancer 48 (6): 904-11, 2012. [PUBMED Abstract]